This past April the Pennsylvania State Legislature proposed using a names-based reporting system to track HIV infection in Pennsylvania. Many in the HIV/AIDS community oppose such an approach, since the collection of HIV-positive individuals' names and personal information may cause fewer people to seek testing and threaten the safety and privacy of those who do. Activists in Pennsylvania, who maintain that a coded system called "unique identifiers" could track HIV adequately without the risks of names reporting, spent a great deal of time in the past several years trying to persuade the state legislature to adopt a non-names-based HIV reporting system. However, the Pennsylvania Department of Health finally dismissed the unique identifier system as being too expensive and unwieldy, and the state moved ahead with a public comment period that would precede the adoption of names reporting.

At the point that the public comment period began, many veteran activists and advocates felt that the battle had been lost. "A lot of us felt like we had lost and were stuck with names reporting now," said Julie Davids of the Critical Path AIDS project in Philadelphia. "We had advocated for unique identifiers for a long time, but when the Department of Health said they wanted names, me and a lot of other people felt like throwing the towel in then."

Feeling defeated, many of Pennsylvania's important AIDS advocates began moving on to other battles. However, a handful of HIV-positive people who felt deeply opposed to names reporting's potential impacts on their lives picked up the issue. Barry Busch, a member of ACT UP Philadelphia, describes his initial efforts: "A lot of bigwigs had given up, but I just kept pestering them to take a stand and make a big stink about this. I and some other people started calling ASOs (AIDS service organizations) around the state, and also informed some journalists about this."

Busch's efforts struck a chord, and before long the lost momentum around names reporting was more than regained. Several newspaper articles described the potential problems with the names reporting system the state was considering, and activists from ASOs began calling each other across the state to plan a lobby day in the capitol. Before long the trickle became a flood, with first Philadelphia's City Council, and then Mayor, coming out against names reporting and even suggesting that Philadelphia might refuse to comply with a names-based reporting system.

Advertisement

"That really got them talking in the capitol," said Busch of City Council's threat to refuse to comply with names reporting. "A similar thing happened in California, when that state was considering names reporting. Basically, San Francisco's department of health said it wasn't giving up any names to the state, no matter what. Thanks to their stubbornness, California now has a safe, efficient system of HIV reporting that doesn't report names. And I think Pennsylvania might be joining them soon." Indeed, many of the state legislators who initially favored names reporting have changed their stances since the recent furor over the issue.

While AIDS activists who oppose names reporting concede the battle is hardly over, it is certain that the momentum around the issue has changed dramatically. On the brink of defeat, some of the most powerful voices of AIDS advocacy in Pennsylvania had fallen silent. It took, instead, a handful of people who felt deeply about the issue's impact on their lives calling to ASOs statewide to spark a sudden grassroots resurgence of debate about names reporting. With several other states also now considering enacting names-based HIV reporting systems, perhaps Pennsylvania's lesson can be useful elsewhere.

Jim Straub is a member of ACT UP Philadelphia.

ISSN # 1052-4207

Copyright 2001 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.

The Body is a service of Remedy Health Media, LLC, 750 3rd Avenue, 6th Floor, New York, NY 10017. The Body and its logos are trademarks of Remedy Health Media, LLC, and its subsidiaries, which owns the copyright of The Body's homepage, topic pages, page designs and HTML code. General Disclaimer: The Body is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through The Body should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.